I have not written for a while. I am extremely sad and scared, and don't know if it is the medication (Tegritol), the fact that people can't see or understand, or if it is the fear of another TN attack waiting for me around a dark corner.
I feel so weak. I used to be strong, social, smart, and have an "can accomplish anything" attitude. The TN is winning. Why can't I just fix it like I do everything else in my life.
Not looking for sympathy, just understanding ear/ears. I continue to fight through the pain, meds, all the doctors, and my anxiety, but it get's harder everyday.
I hear you. And see you! Great images. They SHOW what we can’t.
And yes it’s hard. I don’t know what else to say. You have my empathy. I wish I had answers.
The truth of the matter is no one will ever truly understand unless they’ve experienced the insane pain of TN.
Visual aids help, descriptions help, but as I describe TN pain to people, I feel I’m always saying " I know it sounds unbelievable but it truly is THAT bad"
We the sufferers struggle emotionally because there is no outward sign of TN ( unless others are around when I’ve been in horrid pain, then they see my face cringe, my eyes water, they hear me cry out unexpectedly, my hand reach for my face etc etc) we feel people may think we’re making it up. It’s a mind game sometimes that’s for sure.
But truth be told we must not worry what others think, all we can do is try to educate those who are closest to us.
Having a chronic pain condition affects ALL aspects of our lives…we’d have to be super human to be able to go through all that we do and not be affected.
The fear of TN pain can be crippling…
Sarah, you are still strong and smart! Beyond that you’re brave and courageous!
We should mourn the losses, it’s healthy.
We should also acknowledge how much strength it takes to live with TN.
Huge ((( hugs ))) of understanding… Mimi xx
Hi Sarah,
We know how you feel. hugs.
I wish none of us had to know this pain, it takes a toll physically and emotionally. Just like you I am now a different person than who I was before the TN although I like to remind myself I’m not better or worse as a human being, just different!!!
So even on the bad days I tell myself I am a person in pain…but somewhere deep inside of me…is me. Gosh, not sure I’m making sense.
Anyway, regardless of my ramblings please know that I am so sorry you are in pain. Sending you gentle healing hugs.
Trish
Stay strong Sarah, I know it sucks but maybe your pain will get better. I hate the feeling of when is it going to attack next, I was at a wedding last week and I was so afraid I'd ruin the wedding by yelling out when a big zap would come. My husband saw me clenching my hands but couldn't figure out why. It is so hard trying to explain this thing to everyone, they just say "Oh you get a bad headache!" (Yeah sure.)
It is hard to stay strong. My husband is now disabled, in a wheelchair, leg amputated, this is all visual, everyone understands. I feel so for him and love him so, but there are days with my own pain being a caretaker is tough. Somedays I just say I have a bad toothache, people get that! The fear comes so often, I show my dogs, last weekend had a huge show and while I love every minute in the back of my mind I always fear that pain could come...I try my best to enjoy the good days, but that anxiety is there. I feel your pain and frustration and this is just the place to share it! You still are the person you describe, pain just changes things, and we all ask why me, right...as you know here, you are not alone, we all care. Sending you a gentle hug.
I showed these pictures to my husband last night and I think it caused a major breakthrough in his understanding of my pain. It made hin confess how scared he is as well. We talked an cried for hours togehter. So thank you so much for this.
I am having problems communicating to people that I am sick or rather I think I do tell them but they chose to ignore it. Sometimes I do get comments like "oh but you look so well" or even worse "you look in the pink". People expect you to function when they cannot see any external marks of sickness.
Pfizerlaunched a campaign for the improvement of communication between doctors and pain patients here in Germany (I do not know if they did in the US as well). They specifically advise to work with pictures when communication to doctors, friends and relatives (such as electric shock, drilling machine etc.)
Wow, Sarah, your graphic is powerful. I am so sorry about your pain. I hope you hang around here, I am really encouraged by the people here–they understand and care and are available when I feel like I can’t handle one more day of this hell in my head. Thank you for reminding me that when I look at that electrical picture that others understand this TN monster. Take care, I hope the pain backs off for a while.
Sarah, what you are saying is exactly how I am feeling. A year ago, when I was diagnosed, I was optimistic. I used to say: "There is no way this condition will bring me dowm". Last month, I was at my lowest. I felt that somebody took the "Sophie" out of Sophie. Exactly like you, I feel like this horrible condition is winning. Where is this old Sophie full of energy? Where is this old Sophie who was ready to take over the world? TN took her away...
When you feel that way, please feel free to contact me. We are exactly in the same boat. Thank you for your powerful message.
I know your frusterated...please contact your doc. Perhapse a med evaluation is in order for break through pain. Ttflair upy soothing behaviors to calm down the
A girl’s gotta do what a girl’s gotta do to make herself understood!